May 12 is Chronic Fatigue Syndrome (CFS) Awareness Day

Today is Chronic Fatigue Syndrome Awareness Day, something that means a lot to me. In case you didn’t know already, I have CFS. I don’t keep it a secret. I feel it’s better to be open about my illness than to hide it. I know my limitations, but I also know what I’m capable of.

Do you like my blue ribbon? I support the Blue Ribbon Campaign for ME/CFS Awareness. Chronic Fatigue Syndrome is known by many other different names, the most common of which is Myalgic Encephalomyelitis. It makes a handy acronym for awareness purposes: ME. It also seems a lot less fake than Chronic Fatigue Syndrome.

One of the most frustrating things in the world for a CFS patient is the complete breakdown of the medical profession when we try to discuss Chronic Fatigue Syndrome. Despite the fact that CFS has been recognized by the CDC and Social Security, and despite the fact that there is medical evidence that there are biological differences in people who have CFS and people who do not, many people – including doctors – think it’s a fake illness.

We’ve been called lazy. Hypochondriacs. We’re “just” depressed. “Everyone gets tired.” Yeah, well, not everyone gets tired like this. It took me nearly eight years to figure out what was wrong with me. Eight years without a single good night’s sleep where I would wake up feeling refreshed. Not one. OTC and prescription sleeping pills fail to touch me. I’ve taken 50mg of Benadryl and remained awake for three hours. (The same dose knocks my husband out for a full eight hours, working within minutes, and he’s groggy in the morning.) Ambien, Lunesta, Rozerem – even the expensive formulary drugs did nothing for me.

Then I got a doctor who would listen to me. My psychiatrist – though he’s not treating me for CFS, he’s treating me for anxiety. I explained my sleep deprivation and how I’d literally tried everything on the market to help me sleep. He prescribed me something that would help my anxiety and my insomnia – Remeron. The very first night I took it, I slept the whole night through. For the first time since I had mono in 1999, I woke up feeling refreshed in the morning.

Since then, the Remeron stopped working for my sleep, so I’ve switched over to Trazodone. Neither drug is marketed as a sleep medication, but that seems to be what works for me. Off-label use is amazing for people like me with hard to treat symptoms.

And I’m one of the lucky ones. I can work a (mostly) full time schedule. I’m a damn good writer. Post-exertional malaise for me is getting knocked out of commission for three to seven days because I stupidly attempted a full day of shopping on Black Friday – which is what finally led me to research what was wrong with me – or having to literally crawl up the stairs after attempting more than 5 minutes of aerobic exercise on our Wii Fit. (I can do yoga for longer, thankfully.)

People who aren’t so lucky find it difficult just to get out of bed. Walking down the stairs can be enough to keep them bedridden for the following week. These people can’t hold down jobs, not even working from home like I do. It takes everything they have just to feed themselves and attend to their very basic needs. The worst part is that friends, family, and doctors may not even believe that they’re as sick as they are.

The main problem is that CFS has no cure. Medical research has not yet found any biological indicators to identify CFS, so there is no single test to prove someone has this chronic illness. (It’s unlikely they will find any, as there are no federal research dollars spent on this disease.) Right now, diagnosis is made by identifying symptoms and ruling out all other possible causes. It makes doctors uncomfortable, so many of them ignore it and write it off as something imaginary. After all, if they can’t do anything about it, how can it be real?

My own primary care physician, when I broached the subject of obtaining a formal CFS diagnosis, told me, “There’s no test for CFS and no way to treat it.” And the way she said it left no room for discussion. Looking for a more sympathetic doctor, I fear, would be a wild goose chase, so I do my own research and have my symptoms treated the best I can. I don’t know if my psychiatrist believes I have CFS or not, but he’s willing to treat my inability to sleep and try to heal my mind in order to heal my body. (He claims that one of his former patients “graduated” from therapy and found that his “untreatable” congenital hardening of the arteries was cured. There could be hope for me.)

Please help spread the word – Chronic Fatigue Syndrome is real. Real people have real suffering. (CFS patients have a quality of life similar to patients with AIDS, multiple sclerosis, and end stage renal failure!) Tweets, Diggs, Stumbles, blog mentions are all appreciated. Because you know someone who has CFS. Me. Thank you.

Updated:

My doctor gave me orders to test my blood for Epstein-Barr (EBV) and Lyme Disease! I may have something tangible to show for my suffering.

Comments

Thanks for this post Christina! I’ve also been diagnosed with CFS, and become so frustrated when others (even those closest to me) shrug it off as laziness, or insist that I’m feeling the same exhaustion that everyone else has to deal with. [so suck it up, basically]

My husband has CFS and Fibromyalgia. I can’t relate to the symptoms, but I understand how difficult it can make things sometimes. I agree– It is really important for the word to be spread about this condition. Even members of his own family, despite the fact that his mom and grandfather also have it, still have a hard time believing that he isn’t just making a big deal out of nothing. It has become a part of our lives, and we’re used to making adjustments as needed, but it’s hard to explain these things to people who aren’t as familiar with it. One of the big difficulties we have is convincing people that it isn’t a “one size fits all” condition. While one person might have Fibro and CFS and not be able to get out of bed most days, others continue a fairly normal lifestyle. Just because your grandmother’s friend needs all types of extra support does not mean that anyone who is more fortunate, and has less severe symptoms, doesn’t have it. (Sorry.. venting.)
Great post, Christina. Thanks for raising awareness about this.

You said everything so well. I think it is better to be open about it too. I love the look and layout of your blog. My goal is to tell my story too. Until research comes in with something definite it is dismal. Thanks for inviting me to see this. It is awesome.

dont give up hope……I was diagnosed in 1988. Can you imagine what it was like then ? I am doing well as long as I keep to my protocal which includes both natural and pharmaceutical meds.
Most important—-BELIEVE IN YOURSELF !

You visited my website and asked if I knew of any press release templates for ME/CFS, like the NFA has for fibromyalgia. At the time I didn’t, but I just came across something that could work for this. I posted a reply to you on my site, which you can see here:

Christina: I appreciate your post. My wife has had CFS for almost 12 years and I completely understand your situation. Unless people knew her before, it is difficult to understand how devastating it can be. Thankfully we found a great doctor in SoCal who helped (now retired unfortunately) and caused her to change from a “sack of potatoes” to 35-50% normal.

The doctor described CSF as the result of the brain misinterpreting sensory input. If you touch a hot plate, your hand pulls away. That’s the way it is supposed to work. But oftentimes people with CFS don’t work that way. When they touch a hot plate (or the countless other outside stimuli) the brain misinterprets the input and actually and literally tells their body they are tired and exhausted. It’s not fake. It’s real.

We had gone to many other health professionals and all they did was treat the symptoms, which in this case doesn’t work. If your brain is telling your body one thing (whatever symptom it is), it’s not correct.

I have depression and suffer many, very similar symptoms to yours. I liked that you put “just” depressed, like it doesn’t count. My depression symptoms are not something I usually discuss with anyone and they can be really debilitating. I appreciate that you have surely dealt with the same type of “get over it” reaction to your CFS. I hope that you find what works best for you in dealing with your symptoms.

I was diagnosed at 16 and written off as a lazy high school student. No I am a HONORS student who is SICK. Going on Five years with CFS, in college about to receive a dual degree in education and a minor. I am excited in reading your blog and seeing you have a kid, that make me happy about my future….
We WILL make it and soon people will not role their eyes at me. ~Thanks for the adult standpoint Guys~

Hi, Christina
Thank you for raising awareness for ME/CFS
I am wondering if you drew this awaress ribbon?
I have been using it to raise awaress in Japan but always wondering who drew this.
I arranged a bit and inserted Japanese words on the drawing. I hope you didn’t mind me doing that.

If you drew it, could I have your permission to use it more widely making promotional goods for May 12th awareness campaign in Japan? All sales go to NPO ME Association in Tokyo.(www.mecfsj.wordpress.com)

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